TRANSFORMING TREATMENT.Byline: Susan Palmer The Register-Guard
EDITOR'S NOTE Editor's Note (foaled in 1993 in Kentucky) is an American thoroughbred Stallion racehorse. He was sired by 1992 U.S. Champion 2 YO Colt Forty Niner, who in turn was a son of Champion sire Mr. Prospector and out of the mare, Beware Of The Cat.
Trained by D. : Chloe Fernandez is one of about 300 patients nationwide participating in a clinical trial for treatment of a lymphatic lymphatic /lym·phat·ic/ (lim-fat´ik)
1. pertaining to lymph or to a lymphatic vessel.
2. a lymphatic vessel.
adj. malformation malformation /mal·for·ma·tion/ (-for-ma´shun)
1. a type of anomaly.
2. a morphologic defect of an organ or larger region of the body, resulting from an intrinsically abnormal developmental process. , a rare condition that caused a growth on her face and neck. This is the last in a series about her.
Chloe Fernandez picked up a doll-sized teacup and tossed it behind her on the carpeted living room floor, then looked at her mom, an impish imp·ish
Of or befitting an imp; mischievous.
imp grin on her 2-year-old face.
"Don't do that. You'll break it," Shellie Fernandez said.
But Chloe - operating in classic "terrible twos" mode - picked up another cup, part of her older sister's toy set, and dropped it, too.
Her dad, Paul, sitting on the sofa holding 3-month-old Ella, stood up and said her name in a brook-no-back-talk way, whereupon Chloe jumped up and ran down the hall to her bedroom.
The most wonderful thing about her: She's rambunctiously, blessedly normal.
The third-youngest of the Fernandezes' four children, Chloe was born with lymphatic malformation - a facial deformity Deformity
See also Lameness.
Calmady, Sir Richard
born without lower legs. [Br. Lit.: Sir Richard Calmady, Walsh Modern, 84]
embittered young man with club foot seeks fulfillment. [Br. Lit. sometimes called a cystic hygroma and also known as macrocystic lymphangioma.
While it wasn't life threatening, the apple-sized growth on her right cheek drew unwarranted attention. It was the first thing people saw when they looked at her, and a day rarely went by when Shellie and Paul didn't have to explain the condition.
You'd never know it now.
"Now they notice her hair. They notice how cute she is," Shellie said.
Chloe is one of about 300 people - mostly children - who have participated in a clinical trial of an experimental procedure that shrinks such growths, often making them completely disappear.
Malformations such as hers are rare, occurring in just two or three infants per 100,000 births. Normally, the body's lymph system Lymph System
When sickness or infection invades the body, the immune system is the first line of defense. A big part of that defense is the lymph system. Lymph is carried through the body by lymph vessels that have valves and muscles to help move the fluid. carries away the waste fluids of the body's cells.
In Chloe and children like her, the lymph vessels Lymph vessels
Part of the lymphatic system, these vessels connect lymph capillaries with the lymph nodes; they carry lymph, a thin, watery fluid resembling blood plasma and containing white blood cells.
Mentioned in: Birthmarks have grown abnormally, creating large cysts filled with fluid.
The only approved treatment is surgical removal. But the lymphangiomas often grow back after surgery, and patients also risk permanent injury as surgeons work around the delicate nerves responsible for facial expressions.
The experimental treatment originated in Japan and has been used successfully there for years.
Patients under anesthesia have the fluid removed from their cysts and then receive an injection of a freeze-dried bacteria similar to the one that causes strep throat Strep Throat Definition
Streptococcal sore throat, or strep throat as it is more commonly called, is an infection of the mucous membranes lining the pharynx. Sometimes the tonsils are also infected (tonsillitis). .
The drug, called OK-432 or Picibanil, has shown the most success in patients with large cysts rather than small ones, said Diane Burke, the nurse coordinator of the study being conducted by Dr. Richard Smith Richard Smith is the name of:
The first faculty offered instruction at the University in March 1855 to students in the Old Mechanics Building, situated where Seashore Hall is now. In September 1855, the student body numbered 124, of which, 41 were women. .
"We're hoping, of course, it will someday get marketed here so we can have it for general use," she said. "It works really awesomely with very minimal side effects Side effects
Effects of a proposed project on other parts of the firm. ."
And that seems to be the case for Chloe, who underwent two rounds of injections more than a year ago at Doernbecher Children's Hospital Doernbecher Children's Hospital is a children's hospital located in Portland, Oregon, and associated with Oregon Health & Science University.
The first full-service children's hospital in the Pacific Northwest, Doernbecher provides full-spectrum pediatric care. in Portland.
It was a trying time for Shellie and Paul Fernandez.
Chloe suffered from infections before and during the treatment that required repeated trips to Portland, a hardship for the couple who had to arrange care for their other children, Eleen, 5, and Luke, 2.
But it was also a blessing because friends, family and strangers rallied to help them.
Because the condition affects relatively few children, no drug company stepped forward to cover the costs of the research. The Japanese company manufacturing OK-432 donated the drug for use in the trial, but individuals had to pick up the other costs - doctor's visits, MRI 1. (application) MRI - Magnetic Resonance Imaging.
2. MRI - Measurement Requirements and Interface. scans, anesthesiology anesthesiology (ăn'ĭsthē'zēŏl`əjē), branch of medicine concerned primarily with procedures for rendering patients insensitive to pain, and for supporting life systems under the strains of anesthesia and surgery. - which can add up to about $30,000.
The Fernandez family didn't have that kind of money - Paul supports his family working as a welder at a local RV manufacturing plant.
But the family's church, the Calvary Temple, sponsored a fund-raising drive Noun 1. fund-raising drive - a campaign to raise money for some cause
fund-raising campaign, fund-raising effort
crusade, campaign, cause, drive, effort, movement - a series of actions advancing a principle or tending toward a particular end; "he supported that more than covered the cost of treatment. A small reserve remains in case Chloe needs any follow-up care.
"We are so grateful," Shellie said. "Without the help of everybody, this wouldn't have happened."
Things are still hectic at the Fernandez house, but it's the normal jazz of daily living for a family of six in a little house in north Eugene.
Since her injections, Chloe's face has resolved into the sweet-cheeked cherub cherub (chĕr`əb), plural
cherubim, kind of angel. Cherubim were probably thought of in the ancient Middle East as composite creatures like the winged creatures of Assyria. In Jewish tradition, they are described (Ezek. look of early childhood. A bit of sag along the jaw line where some small cysts remain, and a small crease in the skin where the growth once was, are almost undetectable.
Even two bouts with pneumonia that she suffered late last year did not result in swelling, a concern her doctor, Henry Milczuk, had raised.
Chloe has evolved from a mellow 1-year-old to a spunky spunk·y
adj. spunk·i·er, spunk·i·est Informal
spunki·ly adv. girl who can hold her own with her older siblings, Shellie said.
Her latest skill: unlocking the door and bolting into the front yard.
She also enjoys being an older sister to Ella, Shellie said.
While keeping tabs on the children takes almost all of Shellie's attention, she still finds time to visit Web sites and news groups for parents of children with the condition.
She's happy to be able to share the good news of Chloe's metamorphosis with others, especially with pregnant women whose doctors have detected the condition in their fetuses.
While the malformation is often paired with other more serious birth defects birth defects, abnormalities in physical or mental structure or function that are present at birth. They range from minor to seriously deforming or life-threatening. A major defect of some type occurs in approximately 3% of all births. that cause doctors to suggest abortion, Shellie wants to make sure parents know that there is help available for children suffering from the condition.
The treatment works best for children such as Chloe who have a few large cysts rather than many small ones, Burke said.
The smaller cysts are much more difficult to penetrate with a needle and the medication can't be absorbed through the thick-walled cysts, she said.
It's too soon to say whether the federal Food and Drug Administration will approve the treatment, but most of the patients who have participated in the study - being conducted at 10 different sites throughout the United States United States, officially United States of America, republic (2005 est. pop. 295,734,000), 3,539,227 sq mi (9,166,598 sq km), North America. The United States is the world's third largest country in population and the fourth largest country in area. - have had good results, Burke said.
Shellie wants to make sure people know about that.
"I go out there and say, `Hey, I have a daughter who had this and it wasn't pretty, but now she's healthy.'
`I let them know there is hope."
About lymphatic malformations:
Check these Web sites: www.chw.org/display/PPF/DocID/8485/router.asp and www.facesofchildren.org/conditions/vascular_malformations.html
About the study:
Links to previous stories: First steps to
a cure: www.registerguard.com/news/2003/10/05/a1.chloe.1005.html.
Hope in a needle: www.registerguard.com/news/2003/11/08/a1.chloe.1108.html. A reason to smile: www.registerguard.com/news/2004/01/25/a1.chloe.0125.html.
Two-year-old Chloe Fernandez runs to her mother's arms. Her face now shows little trace of the large cysts that were treated at Doernbecher Children's Hospital in Portland last year. Kevin Clark Kevin Clark is an assistant men's basketball coach at the University of Rhode Island. He is probably most well-known for his stint as the head coach at St. John's during the 2003–2004 season. / The Register-Guard, 2003 A tea party is the order of the day recently for Chloe Fernandez and her mother, Shellie Fernandez, in their Eugene home. Kevin Clark / The Register-Guard Paul Fernandez colors with his daughter Chloe, who has evolved from a mellow 1-year-old to a spunky girl who can hold her own with her older siblings, her family said. LEARN MORE About lymphatic malformations: Check these Web sites: www.chw.org/display/PPF/DocID/8485/router.asp and www.facesofchildren.org/conditions/vascular_malformations.html About the study: www.uihealthcare.com/news/pacemaker/2004/winter/longdistancetherapy.html Links to previous stories: First steps to a cure: www.registerguard.com/news/2003/10/05/a1.chloe.1005.html. Hope in a needle: www.registerguard.com/news/2003/11/08/a1.chloe.1108.html. A reason to smile: www.registerguard.com/news/2004/01/25/a1.chloe.0125.html.